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Learning to Celebrate Small Wins With Chronic Disease 

Learning to Celebrate Small Wins With Chronic Disease 

I feel like I continually write about the challenges of chronic illness. It’s often hard to see passed all the pain. How is it possible to be happy when your body is betraying you? It can be hard to celebrate any type of “win”. What normal person celebrates getting out of the house or taking a shower. Those are just things any regular person does. It’s easy, right? For you or me those are wins. That means we conquered something even if it causes pain later. We did something for us. 

I’m determined to focus on good. It’s the only way to get through all the ups and downs. Between Lupus and Ehlers Danlos I often get lost in the harsh symptoms. I forget to celebrate the wins even if they’re tiny. I am elated to say, after detailing my concerns with my doctor and adjusting my medications, my hair is not falling out in clumps anymore!!! Happy is the only word that can describe how I feel. 

FINALLY!!!

It’s been about three years of my hair falling out. I, at first thought, it was due to me giving birth. It happened with my two boys, as time went on the amount of hair became alarming. I thought wow, this is happening for an extended amount of time.  I reasoned it was because I was older or maybe my hormones were different because I had a baby girl.  Silly right

I know now I was naive in thinking that. I see things so differently in hindsight. There were other symptoms that I didn’t recognize,  I had extremly high levels of anxiety ( didn’t know it was anxiety) and again thought hormones, because I breastfed for eighteen months (yes, 1.5 years). In my mind there had to be an explanation for everything. I couldn’t go in the sun because I had sensitive skin. I was tired because I was a stay at home Mom of three plus I wasn’t as young as when I had my first two.  I really had a reason for everything. 

It made so much sense to me at time. I realize I was kidding myself.  I didn’t  give myself time to recognize there was stuff going on beyond my control. I needed help. 

As my diseases progressed other symptoms creeped in. I had a A HA! moment at one of my doctors appointments. All this “stuff”, even way back when, was due to my diseases/ syndromes progressing. I was so clueless of all the symptoms being linked or how much it could rule my world. 

In a odd way I was relieved. 

Ummm so, I’m not crazy!? I actually have REAL things going on.  Talk about a sigh of relief met with a gasp of oh my this is going to be forever?? 

It’s been challenging. There hasn’t  been a day that Lupus, Ehlers Danlos, or the unpleasant symptoms that come with them hasn’t affected me.

However, I feel like I’ve had a small victory. I have to celebrate the ones I get. 

I got my hair back! Well, not all the way but it’s looking a heck of a lot better. When I shower I’m no longer afraid of seeing handfuls of hair. Honestly, barely any falls out! 

It’s seriously feels like some kind of miracle!

I am new at this. I’ve had health issues since my daughter was born but went undiagnosed. The journey has been long and tidious. Finally being diagnosed has been life changing. My diseases/ syndromes are getting under control and I feel like I’m getting part of my life back. 

I know I’ll never be where I was, although it is the goal. I’m living a new normal and I’m thankful for the passion it has brought to me. All my fellow spoonies I’ve met is one of my biggest blessings through this. I’m not alone. There are people that understand. I can’t thank you enough. 

What’s the point of the post? Simple. Believe it’ll get better. 
Let’s appreciate today, yesterday, and tomorrow. It’s another day to fight and figure out how we can help ourselves. My small win is my hair. Yours could be anything, from getting out of bed or talking with a friend . We have to appreciate what we conquer, know a win is a win, and face our challenges with hope and determination. 

It’s possible. It has to be. 

••If you’re dealing with the same issues please don’t hesitate to message me. I am active on Twitter @_crazywonderful or you can email me. I will tell you what my doctor prescribed and maybe it will work for you.••
*** wrote freehand with limited edits, please be kind, thank you***

Learning to Not Be Ashamed of My Wheelchair

Learning to Not Be Ashamed of My Wheelchair

I’ve told myself on repeat to not be ashamed of my wheelchair. That it’s okay, and if anyone has a problem it’s their issue not mine. I stand by that, I really do. My feelings morph into anxiety and resentment when people I know personally see me in it. It’s my little secret I like to keep to myself. The look on their face is so disheartening.  They almost seem fearful, completely shocked, and mostly confused. I know I have to take care of myself but can’t I have just this one thing not be known to everyone. Will I ever be okay with this? It’s so hard to constantly process everything thrown your with chronic health issues.

I don’t expect others to get this. I barely do. That’s why I feel it’s easier for nobody to know. I don’t have to explain if I look perfectly okay. It’s naive for any of us to think that way though. When we don’t tell, we are faking it. We are hurting ourselves out of fear. Fear of judgement, fear of pity, fear of being looked at differently, I can keep going. So we keep pushing ourselves, we keep causing harm, because we think we can tough through it. They don’t have to see us laying out on our bed in intense pain, or skipping a shower because we’re tired and it’s too much work, they don’t see us cry in despair… because we are strong. I am strong. YOU are strong.

I began to question that thought process. I am putting myself in agony to benefit who? It can’t be for me or my family. I don’t go out, I am moody as heck, my body throbs, all for what!? The hope nobody will notice? Yes, they saw me in a wheelchair. I sure didn’t want them too. I was not ready at all (I don’t know if I ever will be). It could be worse…It always could be worse.  I’m insecure constantly trying to fake I’m okay with all this. But honestly, who would be?

The fact is I need to suck it up. My kids need me, they need me there and not putting myself in more pain than I already am. I found my motivating force. What gets me through the toughest of days. We all need that, to know it’s all worth it. Understanding there’s a bigger force that will get you through.

Life will continue to go on, whether we choose to join in on it or not depends largely on us. There will be bad days. Times that it feels nearly impossible. When you can’t move or don’t want to. That’s okay. You can’t give up on tomorrow. You have to refuse to think of the impossible and instead dream of the possible.

There will be one day where the sky seems bluer and the stars shine brighter. The change won’t be because they are but rather in how you view them. The appreciation for that specific time, that day. So, what’s my point? I hope one day that appreciation happens with my love-hate relationship with my wheelchair. That I will be able to see people I know personally and think “Wow, at least I had the chance to see them.” I’ll get there, I know I will…till then I’ll marvel at the fact I have come this far. I am active about my health, I share my story, and have began to connect with others with similar issues. I’ve already jumped some of my biggest hurdles. Thank you for being on this journey with me.

Where Have I been….

Where Have I been….

I don’t mean to disappear. A lot of the times I have to choose between resting, spending time with my family, or blogging. I work hard to manage my energy and time. If something has to give it’s going to be my blog. Not because I don’t love it, this is my favorite thing to do. To have the ability to communicate with others is such blessing. This is just mine, I don’t do it for my family or to gain notoriety, I do it for me. I absolutely hate that any length of time goes by without publishing a post. I am not sure how to rectify posting more consistently but I am thankful for those who continue to join in.

I wanted to write a quick post explaining where I have been. My health is up and down as I have talked in length about. My hope is that eventually my meds will kick in and I can communicate with everyone on a regular basis. I feel so lucky to have found a way to talk with others about lupus, fibro, ehlers danlos and everything in between. Not feeling so alone has been a tremendous boost in my morale. I am so thankful for those who have stuck with me.

I am planning on posting this week. I have a lot to say (per usual). This twisted road seems to never end but I am determined to handle it with grace. I have to find some type of stability. Blogging gives me a way to let it all out and regain some composure. That’s one of the most important steps, having something just for you. So, needless to say I will be putting more effort into what helps me. I’d Love to hear what helps others. Next post will be up Thursday!

 

Have a great week!!

 

 

 

** Wrote freehand with limited edits, please be kind**

Dealing with The Constant Change with Lupus

Dealing with The Constant Change with Lupus

This weekend was a whole new experience for me. Many of us with chronic disease try to fight for any independence possible. Whether it’s going to the store alone or indulging in our favorite hobby. I, for once, had to let go of all reservations and recognize assistance was the only option. For the first time, my husband pushed me in my wheelchair.

It wasn’t a rented or a temporary one. It’s actually mine, prescribed to me by my doctor, because I need it. When it showed up I was not sure how to feel. Should I be happy that I can get out more? Should I be ashamed that I need it? My feelings were all over. I am a thirty-four year old woman that looks healthy but can hardly walk/ stand for long periods. It’s not just Lupus that causes this issue. I also have Joint Hypermobilty Syndrome and Fibromyalgia. The combination makes it almost impossible to do much without pain.

I don’t want to get lost, I am grateful for my wheelchair. My point was more that I never thought it would get to needing one. I thought somehow I would get better. Getting pushed around in my neighborhood on my family walk made me so anxious. I kept thinking what if the neighbors see me? Or what of people don’t think I really need it? I don’t know why I even care. My kids were so happy to have me with them. Their smiles and nonstop talking helped calm me. They seemed so okay with seeing their mom being pushed in her wheelchair by their Daddy.

I realize I need to be more like my kids. They just want to go! They’re so resilient. Anytime I’m unable to do something because of Lupus or any of my chronic issues there is no hesitation. They don’t get upset, they don’t tell me they wish I was a “normal” mom. That’s me, I want that. I get upset. I am embarrassed.

It’s silly really, why should I be shameful of this? The lack of control is obvious. The ever changing symptoms are constant. Nobody would choose this. All the the adjustments you have to make, the relationships you loose, the dependence created. I’d rather just not go out. No walking equals no wheelchair which means no dependence.

You know what really happens though? I miss out. That day is forever gone. Wasted. I don’t get to enjoy the night air or hear my kids laugh. I miss out on life. I’ve tried to be tough through this. I have fought. I will continue to fight but I have been humbled in knowing it’s okay to need help. I lean on my loved ones and let them know how very much their support means to me.

I have a wheelchair. I need a wheelchair. I am not limited because of it, I am getting the chance to experience life in a whole new way. I am willing to make the adjustments needed in order for my quality of life to be at it’s best. Maybe it’s not what I thought it would be, that’s okay. I get the chance to live at the best of my ability. I refuse to give in, I am not stopping. 

 

 

 

 

 

*****please be kind, wrote freehand with limited edits****

Bonding with Others who Have Chronic Illness

Bonding with Others who Have Chronic Illness

Most of the time when I sit here I simply write what comes to my mind. I am not a professional in any sense. I am just a person who created an outlet because I felt alone. It’s not that I don’t have loved ones that care, it was more like they don’t understand. I feel lonely and isolated. They don’t mean to exclude me, they just don’t get it. That has caused so much anxiety within me. I felt confused and almost ashamed of this nasty beast called Lupus. It has taken me up to this point to be open and unapologetic. I am ready to be an open book, I want to connect with others going through the same issues, and most of all I need to accept that this is not my fault.

Yes, I blamed myself for this. I played the could of, would of, should of game. What if I did this or that instead. There were so many questions that would swirl in my head when all of this first started. As my disease progressed I felt overwhelmed and clueless as what was next. Especially because doctor after doctor made me feel like I may just be a crazy woman. I, for sure, thought this could all very well be all in my head. I thank God I had the fortitude to not give up and advocate for myself.

The short story is this, I don’t want any person to feel alone when dealing with chronic illness. There’s a whole community of people that need to connect. We all need to lean on each other because we are the ones who truly get it. In the last month I have just laid it all out there. I have talked about my health with an odd confidence. In the strangest way it made me feel more in control. I have been diagnosed with a list of issues but the top four would be: Lupus, Fibromyalgia, Joint Hypermobility Syndrome, and IBS. I can finally say that without being scared of judgement.

A lot of people fear what they don’t understand or put down what they don’t know. Well, something I never thought I would need came this week, I received my wheelchair. This was a huge step for me, I have fought getting one. I was encouraged to move forward but I was scared. I didn’t want people to see me in a wheelchair and think I didn’t need it or even worse think I was disabled. You know what? I am disabled. I said it. I need the assistance of a wheelchair, I need help from others, I am unable to do daily tasks on my own, and I refuse to feel shame any longer. I need to focus on my quality of life. Lying to myself or being fearful of what others think will only hold me back from living MY best life.

So, I (kind of) went off on a random tangent. I figured if I have these thoughts running through my mind others may be experiencing the same. I am only one person trying to get through everyday with chronic pain (among other issues). I’ve realized how much I value building relationships with others experiencing this. People that without question after question know what you’re describing. You guys are my people, we get each other and I need that. The encouragement that together we can get through it.

Tomorrow is going to be another day that we all are blessed enough to live. We may not get to run outside, climb mountains, or simply clean our homes but we get another day. I am going to enjoy my children’s laughter, hold my husband as tight as my body allows, and indulge in the healthiest unhealthy food I can. What will you do? My hope is there is at least one thing that makes your day shine a little brighter.

Stop Playing Mind Games with Yourself

Stop Playing Mind Games with Yourself

You ever play mind games with yourself? You tell yourself whatever ever you’re feeling isn’t real and you have the ability to somehow control it. You have the urge to escape reality, bc the constant lack of control causes you to feel crazy?

It’s all in my head… it’s all in  my head…. Wait, is it all in my head??… it’s still there… maybe it’s not all in my head. Maybe just maybe I don’t have the ability to control it… Sooo ummm what do I do now?

The continual barrage of thoughts makes me feel even more insane. Having the desire for answers.. a permanent solution.  In those aching moments  I look around and see just how great my life is. I have so much to be thankful for. So, I can’t get over this… these annoying, chronic, life-altering issues. I mean hey, I am able to be here, present, I am able to adjust.

You have to realize, you can’t always make what you want happen. Sometimes life has other plans, lessons you need to learn. My advice…work hard, keep your head up, and enjoy the journey. I never expected my life to take the turn it did. Gradually every. single. thing. changed.  The greatest occurance through all this unwanted change is it’s just what I needed. I learned to let go, to trust, to be unapologetically me… I learned what to focus on…I learned that I am stronger than I ever thought. There were so many lessons I needed to fully grasp.

The hardest part is the mind game. You have to train your brain to be think the way you want it to. I’ve realized a lot of my thoughts hindered me. Although I always prided myself on being mentally strong, there’s some stuff you can’t just be strong about.

There’s times you need to feel the hurt, be in pain, wonder why… if you are able to rise from that then those experiences make you strong. They make you truly understand the depth of hurt and what resilience is.

Yes, sometimes I want to change my circumstance. I want to proclaim, today I will not be in pain!  I’ll be able to do whatever I choose to and will not have any limitations. Then, something happens and I am tossed back into the reality of my constant. However, there is something different, something I could’ve never EVER gotten without this constant pain in my a**, it’s one of the most precious gifts besides love and family.  I have appreciation and gratitude.

I VALUE myself, my time,  and my loved ones.

It’s a crazy wonderful feeling. To love and hate something so life changing all at once. I want to run, jump, and play but I know it’s not possible. I am ,however, still alive and capable of doing soooo much. I have one disability combined with a few other not so fun stuff but I know there is worse. I bare this with pride. I am appreciative for my lesson, for my reason to grow and prosper.

It may be hard, you may even hate yourself until you get through it. Just don’t forget there’s always a reason, a lesson, or  valuable insight. Don’t ever give  up, KEEP GOING!!

 

 

***Please be kind, wrote freehand with limited edits**